CFS treatment dead-end: now what?

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, May 28, 2009.

  1. ladybugmandy

    ladybugmandy Member

    hi all. i just wanted some advice from you guys.

    as i mentioned in my other posts, my health is worsening pretty quickly. i am supposed to start vistide infusions next week but i just read that they are like $2500 each and that doesn't even include the doctor's visits and extra testing. i would have to do this every 2 weeks.

    my mother said she could afford it for maybe 9 months but that's all. the CFS comes right back when you stop, from everything i have read.

    now i am wondering if there is any point in doing the treatment.

    also, since my liver rejects valcyte at the high enough dose, it might reject vistide too.

    should i just give up?

    i feel like taking a bottle of sleeping pills but i cannot do that to my mom...but i also cannot live this way much longer.

    what do i do?
  2. cfsgeorge

    cfsgeorge New Member

    There is hope mandy. We are all in the same situation. I keep running into dead-ends with my CFS treatments. Then when some treatments like xyrem and ampligen seems promising, it ends up being not affordable and/or non-accessible for most of us. I, too, just feel like giving up, but i can't for my elderly parents.

    This disease has wiped me out and brought me to my knees. I could not live like this for the rest of my life let alone another year or two. I do know now, why some seriously ill patients not just with CFS, but with cancer or AIDS choose to be euthanized. It's to end their suffering not because they are crazy.

    But look mandy, we are at the verge of effective testing and a cure now with Dr de Mierlier's announcement today. Be hopeful.
  3. outofstep

    outofstep Member

    You're not exactly at a dead end-I'm pretty sure that you haven't tried prescription immune modulators or pursued the whole enteroviral infection issue. Since you don't have high viral antibody titers those seem like things that you should be looking in to.

    But first-my advice (as someone who was on Valcyte for awhile) is to stop the Valcyte, stay on the Valtrex since this all started w/ EBV for you and see if you feel any better. Valcyte is a brutal drug that can really screw you up-at this point you don't know what is the actual illness and what are side-effects from Valcyte. It doesn't sound like it's helping you at this point.

    You also need to chill out because you're not helping yourself. Things w/ CFS might totally turn around in the next couple of weeks so why not just take a break? See how things go and then decide what direction to go in.

    ps-have you seen the new de Meirleir stuff? pretty amazing-if you haven't it's at

    the test is cheap-it will be available at

    this should give you some major hope[This Message was Edited on 05/28/2009]
  4. ladybugmandy

    ladybugmandy Member

    thanks everyone. you all make good suggestions. i have just never gone through this much hell for this long. and i know it makes sense, from where you stand, to stop the antivirals but the last time i did, it felt literally like the infections were spreading even more, from my head down to my shoulders and arms. it was murder. i just know it would be wrong to do that. i just know it.

    i am so incredibly foggy i cannot think at all and cannot take care of myself anymore. i know that new discoveries are being made and new HHV6 drugs will be out in a few years, even aside from ampligen, but i honestly think i will be dead by then.

    i just wish there was some help... a little help.

  5. heapsreal

    heapsreal New Member

    You know people with elevated liver enzymes and other liver problems like hepatittis as well as pancreatittis feel rotten with fatigue aches and pains etc. Maybe being treated for something like them could help improve things. The n-acetyl cysteine i have spoken to you about could be an option intravenously as this is whats used in hospitals for tylenol overdoses etc, it would be worth a go and should be reasonably priced.

    You have probably tried immunovir, maybe try it again, revisiting old treatments can be helpful. I have used inosine a supplement form of immunovir and had a few months of relief. Also i would be feeling pretty low if i was in your shoes, an AD ( low dose) might get you out of a hole for awhile, or if already on one, try a different one, I know its not a cure but this disease can wear you down emotionally too.

    Keep battling on sue,
  6. DavidJ.

    DavidJ. New Member

    ok sue,

    this is awful to read something like that. but i know where its coming from , to be honest with you, with these infections you automatically get depressed. your brain is infected and it just doesnt work right anymore. for the first time in my life i know what a major depression is like.

    when i read about all these costs for things that might not even work then i am about to ask my naturopath if it is possible to send you some hhv6 or ebv antivirals, so you could test that.they are ridiculously cheap contrary to these chemicals and at least they work. next time i see her i will ask her about it or if she knows someone in america who could produce it for you.
  7. Pansygirl

    Pansygirl New Member

    sending you a very gentle hug just for you.

    I have Fibro so I don't know that much about the meds for CFS.

    One thing has been on my mind and I remember you have mentioned your mom
    helping you money wise with the treatments.

    My thought is since you are hurting and feeling so bad ~just thought maybe if you could stay with your mom or someone else till you are feeling better.

    I don't want to overstep my boundaries but I know when I'm that sick I like to have someone else in the house with me.

    You are a special lady and I believe you will start to feel better . Please know that we are here for you .

    Believing in better days for you,
    gentle hugs, Susan
  8. ladybugmandy

    ladybugmandy Member

    thanks everyone....

    pansy..sorry to hear about your fibro. i know thats awful as well. i live with my mom now....i got sick at 22 and have always lived with her. we try our best to help eachother but she is 74 so its really hard.

    thanks for listening...
  9. Pansygirl

    Pansygirl New Member

    Sue I will keep you in my thoughts for better days ahead.

    I'm glad you and your mom have each other.

    I'm a good listener anytime.

    Please Keep the hope that each new day will bring better times for you.

    Very gentle hugs special just for you, Susan
  10. Forebearance

    Forebearance Member

    I'm so sorry to hear how awful you are feeling these days, Sue.

    I don't know much about prescription antivirals, but I do always support people following their gut instincts. My one meager suggestion is to try some Virastop. It's a very gentle antiviral, compared to the prescription ones, and much cheaper. But it does do something.

    It also has no side effects, other than stomach irritation about like aspirin causes in some people, and it is not hard on your liver. If you can handle drinking a big glass of water with it, you should be fine. You can take any amount of Virastop and viruses cannot become resistant to it. It is also known for relieving pain.

    Please try to survive this in some way!!! I hope you do!

    [This Message was Edited on 05/29/2009]
  11. ruti

    ruti Member

    Hi Sue - I have been reading your posts in the last few days and I really feel for you that you feel so bad. You helped me a lot before with your vast knowledge and wisdom and very good advices. I don't have a specific advice - you know about your condition and anti-virals a lot more then me - I also feel you are very strong and I am sure better days are to come for you. Please, you must think positive thoughts.

    It is very important to let your liver recover and it seems you need to take a break from the anti virals.

    Maybe it is time to check into a regular hospital and have them do all the consultations possible with whoever can contribute to that and try to get help that you won't have to pay such sums. I know how frustrating it is to get help from the regular medical services and I have read your terrible experiences before and lately. But maybe if they admit you into the hospital - they will have to consult with other doctors and will offer you some help.
    Take a deep breath - you will be OK - the fact you are learning so much about ways to help yourself - you will find a solution. Tommorrow things will look better.

    Love Ruti

  12. ruti

    ruti Member

    Do you have low IGG? IGA? (hypoggamaglobulinia - a low immune system)
    They are considering giving me IV's with gammaglobulines to help me get antibodies (it is atibodies from other people in a blood product).
    It is very expensive but the regular health system might allow it - can that be something you can use and would you be alligable for that?
    Maybe it will help fight the virus you have and it might be something the regular health system will cover?
  13. ladybugmandy

    ladybugmandy Member

    thank you. i have been tested for for immune deficiencies but it didn't show any. i was tested in 2007 by my NYC doctor.

    i am very glad you are getting IV gammaglobulins..they often help CFS patients a lot.

    i have decided to not get the IV cidofovir yet. snce i can afford it only for a few months, there is not much use. i will just get sick again.

    i talked to my NY doctor and we decided i should take 900 mg valcyte a day, valtrex 4 g a day, artesunate and arteminisin according to the RRP guidelines, and some liver supplements.

    needless to say, i cannot go back to dr. lerner.

    i cannot worry about liver cancer now...i am really really close to ending things. my brain feels like its literally shutting down.

    thanks for listening
  14. AuntTammie

    AuntTammie New Member

    I know it can be so hard to hang onto hope with this dd, but I really hope that you can at least be encouraged by all the responses you are getting....they inc some good suggestions and show obvious care and concern for you....anyway, I wanted to let you know that I am continuing to pray for you and am sending more gentle hugs your way....wish I could do more
  15. spacee

    spacee Member

    I don't really have anything to offer that the others haven't already said. They know so much more about these things than I do. No one here wants to "let you go". You mean so much to us.
    I hate that you are suffering so much. If there is anyway to hang do, please do that.

    Much care and concern.

  16. deliarose

    deliarose New Member

    Hi Sue
    I am concerned about you too.

    I hesitate to offer advice because I don't know what is going on with you, but given what I know about my own CFS, I am concerned that the antivirals may be compounding a bad situation.

    I just wonder whether Valcyte adds to toxicity problems in people with CFS who already have a high body body of toxins and viruses because of broken detoxification systems and compromised immunity?

    I can't help wondering if maybe you should take a break from the drugs and continue to monitor liver function... to see if that settles down?

    Whatever you decide, I hope you find better days ahead. I remember 3 years ago, when I was just in a terrible mental fog. It was horrible. Unbearable. So I sympathise.

    I think you have to take it easy on yourself, mentally, physically and emotionally.

    You're a very smart woman. Please don't give up on yourself. It's just a bitch of an illness.

    Sending you good thoughts.
  17. LindaJones

    LindaJones New Member

    please don't give up
    if you had a cfs specialist in your area I think it would help a lot
    even if there is no cure you could go to him for support
    they are trying to open research and treatment centers for cfs

    [This Message was Edited on 05/30/2009]
  18. Catseye

    Catseye Member

    Save them for a crisis situation like a heart attack - that's all they're good for. Your problem is your immune system. I tried to look up vistide infusions and all I got were warning pages saying it will destroy your kidneys. So they get to kill you AND keep the money, lots of it.

    You need an actual health care expert. Dr. Farr does it and you can find a list of other doctors at Their protocol is right on for CFS. Don't give up, just quit expecting the medical profession to cure you. They only sell drugs that are designed for symptom relief. You have a broken guts/immune system and that's what needs fixing. Medical doctors cannot fix this, it's not what they learned in school. Dr. Farr went to school to learn these things rather than medical school, where they just learn how to sell drugs and tests and perform surgery. Perfect for when you have a crisis, but they don't treat chronic diseases properly because they never bother with the root causes.

    Fix your immune system - it will take care of the rest. Get the right tests done, like CDSA, and then work with your health care professional to find out what you need. A regular medical doctor will be unable to read and interpret a CDSA because they don't treat people with diet and supplements. That's what fixed me so I know it's possible. People are just relying on the medical profession for everything when they should limit them to crisis management only.

    good luck and don't give up, I didn't and now I'm okay but it took a long time and lots of homework
  19. ladybugmandy

    ladybugmandy Member

    thanks for the well wishes. i wish the same for you guys...

    i do really need to see a psychiatrist (psychologists and other therapists are not covered here) and i made a few appointments but was always too sick to go. i don't drive and its a long trip downtown to see most doctors.

    catseye...thanks for the suggestions. i have had the stool analysis and gut permeability testing and it was normal.

  20. DavidJ.

    DavidJ. New Member

    i also planned to go to a psychiatrist, but since i developed allergies to all these chemical drugs i now take a herbal antidepressant from the pharmacy. its called st.johns wort and it works ok. although i cannot compare since i never took chemical antidepressants
    [This Message was Edited on 05/30/2009]